Working through it

A breast cancer diagnosis is scary enough without having to worry about keeping your job. But it's a fear thousands face.

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Tracy Fenstermaker was late for work, but not because she’d been caught in traffic or stalled by her 9-year-old son. She was meeting with her doctor to discuss the results of the fine-needle biopsy she’d had after discovering a pea-sized lump in her right breast. She expected to hear that she’d been worried over nothing; at only 35, she had no family history of breast cancer. But the news wasn’t good: The lump was malignant.

Fenstermaker drove to her office in shock. She walked straight to the bathroom, locked a stall door and broke into sobs. “I worked with a lot of men, and I didn’t want them to see me cry,” she says. The diagnosis came only two months into her new job as a budget analyst and customer service representative for an energy company in Augusta, New Jersey. “I remember thinking, What am I going to do? I don’t want to die. I have a son to raise. I have to work,” says Fenstermaker, a single mom who’s now 41. Her mind raced: What if she couldn’t keep her job? How would she pay for the babysitters she’d need while she had her treatments?

In the bathroom, she took a few minutes to regain her composure, then went to talk to her supervisor. Though Fenstermaker’s boss was sympathetic, she kept the conversation focused on work. “I remember her saying, ‘We’ve got to figure out what you’re going to do about the annual budget reviews,'” Fenstermaker says. The deadline loomed.

Fenstermaker put in extra time to finish the reports before her lumpectomy in late November 1999 and earned a bonus for her efforts. In December, she missed about three weeks of work following a second surgery to remove several lymph nodes. But after that, she worked right through her eight rounds of chemotherapy and seven weeks of Monday-through-Friday radiation treatments. “I remember sitting at my desk, running my hand through my hair and watching it fall onto the keyboard,” she says.

At her first performance evaluation, which took place while she was in the middle of chemo, Fenstermaker received praise for setting up budgets, for learning a new computer program, and for her accurate work and professionalism. Those successes bolstered her expectations, so she was surprised when the kudos were fewer at her next review, a few months later. “I thought it was going to be this victorious moment because I had worked through this terrible thing,” she says. “Instead, my boss told me I wasn’t opening enough accounts, wasn’t handling phone calls and made too many errors with details,” recalls Fenstermaker. She took the criticisms hard. “It felt like the worst review of my life.”

Fenstermaker was nearly inconsolable at her radiation appointment later that day. “I just felt defeated,” she says. “I pushed myself the extra mile to come in, sick as I was, and to always do the best I could.” The technician was so concerned that he called Fenstermaker’s doctor, who urged her to go on disability leave. The months of treatment had left her physically and emotionally depleted. The company arranged for her to take about six weeks off, through the end of her radiation as well as some recovery time. By the time she returned to the office, right before the anniversary of her diagnosis, Fenstermaker had finally started to feel more like herself.

As treatments and solutions for their side effects continue to improve, more women than ever are learning that having breast cancer no longer requires putting your work life on hold for months on end. But like Fenstermaker, women often find that managing a career during cancer treatment comes with as many hurdles as the disease itself. Doctors estimate that at least half of breast cancer patients work during treatment, and more than 80 percent of all cancer patients return to their job after diagnosis. Many work for the same reasons that compelled Fenstermaker: They can’t afford to lose the income or the much-needed health insurance.

“When I was diagnosed last year, I wasn’t so much concerned with the cancer as with how I was going to do everything—a lumpectomy, eight weeks of daily radiation, taking care of my kids, my husband and my job,” says Amy O’Marah, 38, who lives in Chicago and works mostly from home 30 to 50 hours a week for a food-brokerage firm. “We have five kids, and we both have to work,” she says.

On top of the financial worries, some working women may face resentful coworkers along with a debilitating blow to their self-image. “Women want to maintain their integrity, their sense of who they are, and for many that’s very bound up in their work,” says Ruth Oratz, M.D., associate professor of clinical medicine at New York University School of Medicine in New York City. Going to the office can provide a welcome feeling of control during a stressful time when a woman may otherwise feel powerless.

But for as many as one in four women with breast cancer, the fear of being fired weighs heavily, according to a Self.com poll. That anxiety seems warranted: Despite improvements, some cancer survivors still experience discrimination, according to lawyer Barbara Hoffman, a founder of the National Coalition for Cancer Survivorship in Silver Spring, Maryland. “There’s an underlying bias that women don’t need to be in the workplace as much as men, especially if they are married with children,” says David M. Fish, an employment lawyer in New York City. “Sometimes this thinking can lead employers to treat women with cancer differently.”

In fact, surveys have reported that about two thirds of supervisors are concerned that an employee with cancer may no longer perform adequately. But these fears often aren’t borne out: “The idea that people with cancer will have to take a lot of time off is a misperception,” says Carolyn Messner, D.S.W., director of education and training at CancerCare in New York City, a nonprofit group that offers free professional-support services. Indeed, new research shows that women with breast cancer lose only about six hours of work a week on average, miss a total of only about a month during the course of treatment (and not all at once) and, when treatment concludes, tend to work even more hours than their healthy counterparts, says Cathy J. Bradley, a health economist and professor of health administration at Virginia Commonwealth University in Richmond.

Kathy O’Leary, 35, was diagnosed with breast cancer nearly four years ago while working as a program-services manager for a nonprofit organization in Cincinnati. During chemotherapy, she worked part-time from home and went to the office when she was able. “My bosses told me to take care of myself and not to worry,” she says. But about six months later, O’Leary’s company restructured and eliminated her position; two other people with the same title were also let go. Her insurance would continue for six months, and she was offered the opportunity to apply for a new position—albeit one in another city. “At the time I had far too much on my mind to consider anything other than beating the disease—let alone applying for a new job,” O’Leary recalls. Early this year, O’Leary attended a workshop on employment issues and sat in shock as she listened to the protections she feared she might have missed. “I kept thinking, Where was all this information when I needed it?” says O’Leary, who now works for a swimsuit company.

Most employees qualify for job protection under the Americans With Disabilities Act. The ADA covers companies with a staff of 15 or more, protects against discrimination and allows for “reasonable accommodation,” which could mean modifying job responsibilities or offering flex time for chemo treatments. Many others are also eligible for the Family and Medical Leave Act, which governs employers with at least 50 employees and allows for 12 weeks of unpaid leave (with health insurance). Workers at companies with fewer than 15 employees may be covered by local or state disability and anti-discrimination laws.

The majority of companies adhere to these laws, but violations do happen. According to Fish, a working woman may encounter everything from subtle cold-shoulder tactics and whispers about her value to more blatant discrimination, such as being transferred to a less convenient location. “Of course, you can’t be fired for having cancer, but firms are becoming much more clever about finding ways around it,” says Patricia Spicer, coordinator of the breast cancer program at CancerCare. One common strategy: adding requirements the person can’t possibly meet, leading to dismissal. Since 1993, the first full year charges were tracked, the Equal Employment Opportunity Commission has logged about 400 cancer-related allegations per year. “But the numbers don’t represent how much discrimination is out there,” Fish says. “All they represent are the people with the money, the knowledge and the physical and emotional fortitude to file. Most people don’t get to that point.” (For more on your rights, see “How to Tell the Boss If You’re Diagnosed With Breast Cancer.”)

Even if a woman with breast cancer works for the most supportive employer, no law can legislate how colleagues will react to her diagnosis. “An employee with breast cancer is going to scare people,” says Kimberly Cox, 40, a lawyer in Westchester, Pennsylvania, who was diagnosed last December. “It’s not fair, but it’s truthful. Of course they’ll never say it to you, but your colleagues are definitely going to think, Oh, no. Does this mean I have to do more work?” For her part, though, Cox says she was lucky to have worked with extremely supportive people.

It’s only natural that coworkers worry about how a woman’s illness might impact them. Add to that the fact that even thinking about cancer makes many people uncomfortable, and it’s not that surprising most women who’ve had breast cancer can rattle off a long list of stupid things people have said to them. O’Marah remembers going to the office one day after a night she hadn’t slept. “I walked in and someone said, ‘Oh. You don’t look so good.'” Although she responded with the tame “I’ve been through a lot,” she squelched what she really wanted to say: “You wouldn’t look so hot yourself if you just had half of your breast removed!”

The fatigue, weight gain and hair loss that often accompany breast cancer treatment can cause significant changes in appearance that can shake even the most confident woman. And though the office is first and foremost about work, it’s also a social environment that can nurture or undermine self-image.

Perhaps that’s why some women with cancer choose to act as if nothing has changed after diagnosis. When Cox learned she had cancer, she decided to do everything she could to keep up her appearance. She invested in a fabulous wig, made sure her makeup was always perfect and told anyone who asked that she was doing well. “Of course, they didn’t see me throwing up, crying, crawling into bed,” Cox says. “Even when I wanted to throw up on my shoes and fall asleep at my desk, I still felt lucky to be there. Work was my escape.”

Many women have such a strong need to continue working that doctors often have to step in and rescue them. “Sometimes I become the bad guy and urge patients to take time off,” says Marisa Weiss, M.D., a radiation oncologist at Lankenau Hospital in Wynnewood, Pennsylvania, and founder of BreastCancer.org. Dr. Weiss did just this for Cox, who was one of her patients. “I came in, and I was exhausted and crying,” says Cox, who underwent two surgeries to remove malignant tissue and lymph nodes, along with chemotherapy and radiation. “My doctor took my face in her hands and said, ‘What are you not getting? You are fighting for your life and you’re running yourself ragged. You need to take two weeks off.'” Because she bills by the hour, Cox had no paid sick days, so she agreed to one week. “I slept for 20 of 24 hours for five days,” she says. “Cancer is surreal, and you just keep pushing for the normalcy. But I didn’t realize how tired I was.”

“Women are used to pulling their own weight and everyone else’s,” Spicer says. Coming to terms with the fact that you’re not exactly the same person you were before cancer proves difficult for some. For O’Marah, who has severe insomnia, knowing that she needs to take a nap every day to function makes her angry. Plus, her job is intensely detail-oriented. “I make a lot of mistakes, which is frustrating because I usually don’t find them until I finish and that means redoing the whole thing,” she says.

As upsetting and aggravating as problems such as O’Marah’s can be, what’s important for women and their employers to remember is that these issues are very often temporary. That’s why it’s in everyone’s interest to find mutually beneficial solutions. “It boosts morale and creates goodwill among the staff when they see their colleague being treated well when she’s ill,” Fish says. “In some companies, however, breast cancer is still seen as a women’s issue. The truth is, it’s an issue that affects us all.”